'In a world full of princesses be a dinosaur like Ava' - mum's tribute to daughter, 5, who died suddenly from rare disease
The parents of an adored five-year-old girl who died suddenly of an extremely rare disease have paid tribute to their ‘little dinosaur’ as a garden is opened in her memory.
Ava Bailey fell ill with what looked like a normal sickness bug in December 2017, but within days the beautiful little girl passed away in hospital from a disease so rare that it affects just four in a million people worldwide each year.
Now her parents, Martyn Bailey and Deborah Moore, have paid tribute to their daughter as they hope to raise awareness of Lemierre’s Syndrome and raise funds in Ava’s name.
The 33-year-old mum, who was diagnosed with cervical cancer months before her daughter’s sudden passing, says: “If we can help one family not go through what we have then we have succeeded in our Ava’s name.”
Ava, of Peterlee, fell ill with what looked like a normal children’s sickness bug. She had thrown up and was very lethargic as most children are when they’re ill, mum Deborah said.
But in a matter of hours Ava’s condition worsened and she began dropping in and out of consciousness – and her concerned family rushed her to hospital.
She was admitted on Friday, December 1, 2017, at 9.30pm and died two days later on Sunday, December 3, evening at 6.30pm after Deborah and Martyn made the devastating decision to turn off the machine keeping her alive.
It was only months later following a post-mortem that the grieving family found out ‘bubbly’ little Ava had passed away from Lemierre’s Syndrome.
The rare disease can be life-threatening and it is estimated that between 5% and 18% of cases are fatal.
Deborah said: “The neurologist thought she had a brain stem injury. We were told on the Sunday that she had irreversible damage to her brain and there was no hope – she wasn’t there anymore.
“Ava loved football and dinosaurs. She was a real tomboy. She loved being dirty and playing with the boys.
“She was a really happy kid and her laugh was infectious.
“She was really close with her brother Owen, who is 12 now, she called him onion because she couldn’t say Owen.
“We do all we can to raise awareness of Lemierre’s Syndrome. I tell everyone to look out for the signs, if we can help one family not go through what we have then we have succeeded in our Ava’s name.”
Six months before Ava’s sudden passing, Deborah was diagnosed with cervical cancer and had to undergo a radical hysterectomy.
“That year was the worst year of my life. I don’t think anyone has gone through as much as I did,” said Deborah.
“I wouldn’t be here without my two close friends, Helen Deller and Angela Elwood, I was still recovering from cancer and needed an emergency operation for a perforated bowel after Ava passed.”
The family complete an annual fun run to raise money for Rare Diseases UK and both Ava’s parents are looking to do a sponsored parachute jump.
Before the summer holidays began, Ava’s primary school, Shotton Hall Primary School, opened a special garden in her memory filled with some of Ava’s favourite things.
“I’m extremely proud of the school for me and our Ava looking around the garden,” said Deborah.
“Everything she loved was in the garden. There’s a picture of her with her face painted like a dinosaur.
“At parties all of the little girls were painted like princesses with flowers and butterflies but our Ava stood out from the crowd.
“I always say, ‘In a room full of princesses be a dinosaur like my Ava’ – that’s Ava to a T.
“She is very loved and very missed.”
Companies in the surrounding area pulled together in the community project to build the garden.
Anita Boyd, headteacher at the school, said: “Ava was with us in year one when we lost her in December 2017. We set up a community project to develop these gardens in memory of Ava. We want to help the mental health and well being of the children in our school so we started this project.
“We’ve worked with East Durham College and a lot of companies that provided all the equipment freely. We’re hoping we will get lots of good use out of the garden in future.”
What is Lemierre’s Syndrome?
Lemierre’s syndrome occurs from a rare type of bacterial infection in the throat. When it’s not treated, the infection can spread to the vessels that carry lymph fluid throughout the body. When these vessels get infected, they can’t properly return fluids that have leaked from bloodstream back into your circulatory system.
Lemierre’s syndrome can also cause the jugular vein to swell. When this happens, it can cause a potentially fatal blood clot in the jugular. This swelling is known as internal jugular thrombophlebitis. In some cases, surgery may be needed to treat this condition. It can cause serious or life-threatening complications.
The disease affects fewer than four in a million people worldwide and research estimates between 5% and 18% of these cases are fatal.
What are the symptoms to look out for?
The symptoms of Lemierre’s syndrome may not appear right away. This condition starts in the throat, so the first symptom is usually a sore throat.
Other early symptoms include:
- Swelling in your neck around your lymph nodes
- Abnormal headaches
- Pains that feel like they’re shooting down your neck
- High fever
- Feeling stiff, weak, or exhausted
- Feeling more sensitive to light than usual (known as photophobia)
- Trouble breathing or swallowing
- Coughing up blood or bloody mucus
- Loss of appetite, feeling nauseous or vomiting